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2016-2017 INTERAGENCY AUTISM COORDINATING COMMITTEE strategic plan for autism spectrum disorder 2016-2017 INTERAGENCY AUTISM COORDINATING COMMITTEE strategic plan for autism spectrum disorder 2016-2017 IACC STRATEGIC PLAN FOR AUTISM SPECTRUM DISORDER COVER DESIGN Medical Arts Branch, Office of Research Services, National Institutes of Health COPYRIGHT INFORMATION All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows. SUGGESTED CITATION Interagency Autism Coordinating Committee (IACC). 2016-2017 Interagency Autism Coordinating Committee Strategic Plan For Autism Spectrum Disorder. October 2017. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/strategic-plan/2017/. II 2016-2017 IACC STRATEGIC PLAN FOR AUTISM SPECTRUM DISORDER TABLE OF CONTENTS About the IACC................................................................................................................................................................................................... IV Introduction ...........................................................................................................................................................................................................V Overview of Progress on Strategic Plan Objectives ................................................................................................................................. IX 2016-2017 Strategic Plan Objectives ...........................................................................................................................................................XII Question 1: How Can I Recognize the Signs of ASD, and Why is Early Detection So Important? ............................................. XIV Question 2: What is the Biology Underlying ASD? ................................................................................................................................... 12 Question 3: What Causes ASD, and Can Disabling Aspects of ASD be Prevented or Preempted? ............................................28 Question 4: Which Treatments and Interventions Will Help? .............................................................................................................. 44 Question 5: What Kinds of Services and Supports are Needed to Maximize Quality of Life for People on the Autism Spectrum? .................................................................................................................................................................... 62 Question 6: How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood? ...............................................................................................................................................72 Question 7: How Do We Continue to Build, Expand, and Enhance the Infrastructure System to Meet the Needs of the ASD Community? ..........................................................................................................................................................86 Budget Recommendation .............................................................................................................................................................................. 100 Statement on Duplication of Effort ............................................................................................................................................................. 104 Conclusion ........................................................................................................................................................................................................ 106 Interagency Autism Coordinating Committee Member Roster ...........................................................................................................163 Strategic Plan Working Group Members ...................................................................................................................................................167 Office of Autism Research Coordination Staff List ................................................................................................................................. 180 III 2016-2017 IACC STRATEGIC PLAN FOR AUTISM SPECTRUM DISORDER ABOUT THE IACC The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating Federal activities concerning autism spectrum disorder (ASD) and providing advice to the Secretary of Health and Human Services (HHS) on issues related to autism. The Committee was established by Congress under the Children's Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed most recently under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2014. Membership of the Committee includes a wide array of Federal agencies involved in ASD research and services, as well as public stakeholders, including self-advocates, family members of children and adults with ASD, advocates, service providers, and researchers, who represent a variety of perspectives from within the autism community. The IACC membership is composed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by individuals and families affected by autism. Under the CAA and subsequent authorizations, the IACC is required to (1) develop and annually update a strategic plan for ASD research, (2) develop and annually update a summary of advances in ASD research, and (3) monitor Federal activities related to ASD. Through these and other activities, the IACC provides guidance to HHS and partners with other Federal departments, Federal agencies, research and advocacy organizations, and the broader autism community to accelerate research and enhance services with the goal of profoundly improving the lives of people with ASD and their families. For more information about the IACC, see http://www.iacc.hhs.gov. IV 2016-2017 IACC STRATEGIC PLAN FOR AUTISM SPECTRUM DISORDER INTRODUCTION The Interagency Autism Coordinating Committee (IACC) members on the Committee, which includes at least two is a Federal advisory committee that advises the Secretary members on the autism spectrum, at least two parents or of Health and Human Services on issues related to legal guardians of individuals with autism, and at least two autism spectrum disorder (ASD). It was established advocacy, services, or research organization representatives. by the Children’s Health Act of 2000 (Public Law 106-310), Several of the members have dual roles as professionals in reconstituted under the Combating Autism Act of 2006 fields related to ASD as well as having personal experience (CAA; Public Law 109-416), and was most recently renewed with ASD. The slate of new and returning IACC members in 2014 under the Autism Collaboration, Accountability, was announced in October 2015 and embodies a wide Research, Education, and Support Act (Autism CARES Act; variety of views, perspectives, and expertise. Public Law 113-157). One of the statutory responsibilities of the IACC under the CAA and subsequent authorizations As in previous years, the IACC Strategic Plan is is the development of a strategic plan for ASD, to be updated organized around seven general topic areas that are annually. The IACC Strategic Plan, first issued in 2009, was represented in the Plan as community-focused questions developed by the IACC – including Federal officials and (e.g., Question 1, “How can I recognize the signs of ASD, public stakeholder members – and each edition has been and why is early detection so important?,” which covers informed by extensive input from researchers, adults on the topic of screening and diagnosis). Each question is the autism spectrum, parents, advocates, and the general assigned a chapter in the Strategic Plan that provides an public. This inclusive process has ensured that the IACC Aspirational Goal, or long-term vision for the question, and Strategic Plan reflects diverse perspectives from across the includes: a description of the state of the field; the needs autism community. The Autism CARES Act requires that the and opportunities in research, services, and policy; and IACC include in the Strategic Plan information concerning, three to four broad objectives for each question topic. “as practicable…services and supports, for individuals with There is also one cross-cutting objective on the topic of an autism spectrum disorder and the families of such ASD in females. individuals,” along with information about ASD research. In this edition, which includes an entirely new set of For the 2016-2017 IACC Strategic Plan, the Committee strategic objectives, the IACC Strategic Plan for Autism agreed that given the recent advances in the autism field, Spectrum Disorder addresses this new requirement by it was an appropriate time to re-evaluate the autism taking a more comprehensive approach that not only landscape and formulate new objectives for each question. addresses autism research, but also incorporates more With access to an extensive portfolio analysis conducted information about gaps, opportunities, and implications by the National Institutes of Health (NIH) Office of related to autism services, supports, and policies. Autism Research Coordination (OARC), as well as the annual IACC Summary of Advances documents from past This 2016-2017 revision
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